PROSOPAGNOSIA

What is it like to live with face blind­ness? Hazel Plas­tow
tells the agonies of not recog­nis­ing her own fam­ily

Recog­nis­ing our near­est and dear­est comes nat­u­rally to most of us. But for an es­ti­mated one in 50 like Hazel Plas­tow, a 57-year-old char­ity ex­ec­u­tive from Cater­ham in Sur­rey, face blind­ness chal­lenges her daily.

Hazel has a cu­ri­ous con­di­tion that means she is un­able to recog­nise her hus­band, par­ents, friends and col­leagues. She can’t even iden­tify her own face in a pho­to­graph. Face blind­ness, or prosopagnosia, is a spec­trum con­di­tion that can af­fect some­one rel­a­tively mildly or, as in Hazel’s case, se­verely.

Yet de­spite its rel­a­tively high preva­lence, the con­di­tion re­mains fairly un­known. A new sup­port group, Face Blind UK – es­tab­lished by a group of peo­ple with the con­di­tion – hopes to raise aware­ness and high­light sup­port and cop­ing strate­gies for those in need.

Hazel first learned about face blind­ness four years ago af­ter hear­ing a ra­dio re­port on an Amer­i­can re­search project. Un­der­stand­ing com­pletely what she heard, she con­tacted a re­searcher spe­cial­is­ing in the con­di­tion at the Uni­ver­sity of Lon­don and was di­ag­nosed.

It was a huge re­lief. “It shows peo­ple it isn’t just that you aren’t try­ing hard enough,” Hazel says. “With­out know­ing there is a rea­son, you end up doubt­ing your­self.”

The frus­tra­tion felt by her­self and oth­ers to­wards their in­abil­ity to recog­nise any­one has been less­ened by the un­der­stand­ing that the con­di­tion is per­ma­nent and be­yond their con­trol. “It’s like be­ing short. You wouldn’t crit­i­cise some­one for that,” she says. Hazel is now also more able to con­trol her own anx­i­eties. But the feel­ing of dis­ori­en­ta­tion re­mains a familiar one. “Your re­al­ity is shift­ing all the time,” Hazel says. “We were at a fam­ily meal re­cently and I thought the wait­ress had come over. Ac­tu­ally it was my sis­ter but I hadn’t seen her get up from the ta­ble.”

In a few cases, face blind­ness de­vel­ops af­ter a brain in­jury such as a stroke ( known as ac­quired prosopagnosia), but the vast ma­jor­ity of cases are life­long – due to a par­tic­u­lar part of the brain not hav­ing de­vel­oped in the nor­mal way.

Hazel has had the con­di­tion as long as she can re­mem­ber and as a child, she was al­ways seen as very shy. “All my life I have been fit­ting around the face blind­ness,” she says.

At school, she al­ways sat at the back and was only able to form a few friend­ships: “I was very in­se­cure in the so­cial melee, even in a small school, and I re­lied heav­ily on the rou­tine and con­text to try and work things out.”

Of­ten, she ex­plains, prosopag­nosics seek out the com­pany of peo­ple with dis­tin­guish­ing fea­tures. One boyfriend was six foot four with a large beard. “That was eas­ier. It gave me more con­fi­dence walk­ing into the pub to meet him,” she laughs.

As she grew older, Hazel found her con­di­tion in­creas­ingly lim­it­ing. The de­vel­op­ing re­la­tion­ships and so­cial life of the late teen- age and early adult years were stress­ful. “I worked very hard at cov­er­ing up,” she says. “I thought ev­ery­one else was just bet­ter at so­cial things.”

Hazel has de­vel­oped many tac­tics to help her­self: “Of­ten I can tell from the way some­one acts that I must know them. I have peo­ple walk up and hug me but I have no idea who they are. I ask gen­eral ques­tions hop­ing for clues – some fam­ily names or some­thing.” On many oc­ca­sions, though, she says she walks away none the wiser.

At work – where she reg­u­larly has to at­tend meet­ings and con­fer­ences – she is par­tic­u­larly good at re­mem­ber­ing names and uses notes and di­a­grams as trig­gers. But peo­ple can take of­fence when she is un­able to recog­nise them. Cer­tain set­tings are par­tic­u­larly chal­leng­ing. “Fu­ner­als are the worst. It isn’t the place to start talk­ing about your own is­sues and there are peo­ple you ought to know and peo­ple you’ve never met.”

At her mother-in-law’s fu­neral last year, Hazel found her­self in con­ver­sa­tion. “I asked the woman how she had known Muriel. She was my cousin.” Dr Sarah Bate, direc­tor of the Cen­tre for Face Pro­cess­ing Dis­or­ders at Bournemouth Uni­ver­sity, be­lieves aware­ness of prosopagnosia is grow­ing, slowly: “It is per­haps where ADHD was 20 years ago.” There is, she says, much work to be done.

“With­out un­der­stand­ing and sup­port, young peo­ple can ex­pe­ri­ence dif­fi­culty in mak­ing friends, so­cial anx­i­ety and de­pres­sion,” says Dr Bate. “We work with teenagers who tell us they are un­able to form re­la­tion­ships and fear they’ll make er­rors that ruin their chances. The adults who come to us say they want to make it eas­ier for the next gen­er­a­tion.”

There is cur­rently no treat­ment, and pa­tients ap­proach­ing their GPs are re­ferred to uni­ver­sity re­searchers rather than med­i­cal spe­cial­ists (as­sum­ing they are given any re­fer­ral at all), but Dr Bate says de­part­ments such as hers can re­ally help.

They can sug­gest com­pen­satory strate­gies to ease so­cial dif­fi­cul­ties and cre­ate sup­port net­works among those with the con­di­tion. Schools and work­places can be asked to use seat­ing plans, name tags, even coloured rib­bons or badges for chil­dren, to help them iden­tify oth­ers.

Dr Bate hopes the grow­ing body of re­search will lead to bet­ter sup­port. De­vel­op­men­tal prosopagnosia was thought to be rare un­til the start of the cen­tury, when the In­ter­net led to a del­uge of re­ported cases. “But a lot of peo­ple still don’t re­alise they are dif­fer­ent. They as­sume ev­ery­one recog­nises peo­ple by their hair, their shoes, their voice,” she says.

Re­searchers are try­ing to iden­tify why the con­di­tion de­vel­ops.

In some cases, there ap­pears to be a ge­netic link, with the con­di­tion run­ning in fam­i­lies. An early his­tory of vis­ual prob­lems is also com­mon.

“In child­hood, it ap­pears crit­i­cal to have nor­mal in­ter­ac­tions with faces. If that is missed, they may miss a win­dow for de­vel­op­ing nor­mal face-recog­ni­tion skills,” ex­plains Dr Bate.

How se­verely an in­di­vid­ual is af­fected varies widely: “We have par­ents who can’t recog­nise their chil­dren. One mother told us she went to the wrong child at the nurs­ery. That is very hard emo­tion­ally.” It is, Hazel Plas­tow be­lieves, easy to un­der­es­ti­mate the im­pact of the con­di­tion. “Chil­dren, in par­tic­u­lar, are very vul­ner­a­ble,” she says. “They can feel lost and alone. That is why we need to talk about it – we can change that.”